The Need for End-of-Life Care Training in Nephrology


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The Need for End-of-Life Care Training in Nephrology

  1. 1. The Need for End-of-Life Care Training in Nephrology: National Survey Results of Nephrology Fellows Jean L. Holley, MD, Sharon S. Carmody, MBA, Alvin H. Moss, MD, Amy M. Sullivan, EdD, Lewis M. Cohen, MD, Susan D. Block, MD, and Robert M. Arnold, MD ● Because of the high mortality rate of end-stage renal disease, nephrologists care for many dying patients. However, the education of nephrology fellows in palliative care has not been assessed. We surveyed second-year nephrology fellows to assess the quantity and quality of teaching they received in palliative medicine and also asked about their preparedness to manage patients at the end of life. A 63% survey response rate yielded 173 surveys for evaluation. Nearly all fellows (99%) agreed that physicians have a responsibility to help patients at the end of life; half thought it was very important to learn how to care for dying patients. On a 10-point scale in which 0 is no teaching and 10 is a lot of teaching, fellows reported significantly less teaching in end-of-life care (mean score, 3.8 2.6) than in managing a patient with distal renal tubular acidosis (mean score, 6.3 2.5) or on hemodialysis therapy (mean score, 8.9 1.5; all P < 0.0001). Specific palliative care content areas were taught infrequently; only 22% of fellows were taught how to tell a patient he or she is dying. Fellows who had contact with a palliative care specialist reported more education on end-of-life issues and believed they were better prepared to provide such care. Fellows’ palliative care experiences during fellowship frequently occurred without attending nephrologist supervision; 32% of fellows had conducted 2 or fewer family meetings, and 26% of all family meetings occurred without an attending nephrologist. Fellows believed they were best prepared to manage a patient on hemodialysis therapy (mean score, 8.9 1) and least prepared to manage a patient at the end of life (mean score, 6.1 2; P < 0.0001). Our results show that most nephrology fellows believe they should learn how to care for dying patients, but most fellowship programs do not offer this training. Our study therefore suggests that training in palliative care be incorporated into fellowship program curricula. Am J Kidney Dis 42:813-820. © 2003 by the National Kidney Foundation, Inc. INDEX WORDS: End-of-life care; medical training; medical education; long-term dialysis; end-stage renal disease (ESRD). P RACTICING nephrologists spend at least 35% of their time caring for long-term dialysis patients.1 Because of the high mortality ogy supporting the study project and encouraging fellows to participate accompanied the survey. A similar letter was sent to each Fellowship Program Director asking him or her to encourage their fellows to complete the survey. The survey’s rate of end-stage renal disease, nephrologists treat many dying patients and often confront issues of withholding or withdrawing dialysis From the Section of Palliative Care and Medical Ethics, therapy. These end-of-life care issues are incorpo- University of Pittsburgh Medical Center, Pittsburgh, PA; Nephrology Division, University of Virginia Health Systems, rated within palliative medicine. The nephrology Charlottesville, VA; Center for Health, Ethics, and Law, community has begun to provide clinical guide- West Virginia University, Morgantown, WV; Division of lines in palliative care management,2,3 but the Psychosocial Oncology and Palliative Care, Dana-Farber palliative care education of nephrology fellows Cancer Institute and Brigham and Women’s Hospital, Bos- has not been assessed. We surveyed nephrology ton; and Psychiatric Consultation Service, Baystate Medical Center, Springfield, MA. fellows in the spring of their second year of Received April 16, 2003; accepted in revised form June training to assess the quantity and quality of 16, 2003. teaching they received in palliative medicine. We Supported in part by a grant from the Robert Wood also asked them to evaluate their preparedness to Johnson’s Last Acts Professional Education Subcommittee; manage patients at the end of life. an American Society of Nephrology Student Scholar Award (S.S.C.); Project on Death in America Faculty Scholars Program (R.M.A.); Greenwall Foundation (R.M.A.); Ladies METHODS Hospital Aid Society of Western Pennsylvania (R.M.A.); In April 2002, a survey addressing training in end-of-life International Union Against Cancer Yamagiwa-Yoshida Me- care was sent to all second-year nephrology fellows in the morial International Cancer Study Grant Fellowship United States (n 274). The list of fellows was obtained (R.M.A.); and the LAS Trust Foundation (R.M.A.). from the American Medical Association trainee database. Address reprint requests to Jean L. Holley, MD, University of Information provided by the American Medical Association Virginia Health Systems, Nephrology Division, Box 800133, was verified and updated based on information provided by Charlottesville, VA 22908. E-mail: directors of individual nephrology training programs. A © 2003 by the National Kidney Foundation, Inc. letter signed by the Chairman of the Training Program 0272-6386/03/4204-0012$30.00/0 Directors Committee of the American Society of Nephrol- doi:10.1053/S0272-6386(03)00868-0 American Journal of Kidney Diseases, Vol 42, No 4 (October), 2003: pp 813-820 813
  2. 2. 814 HOLLEY ET AL cover letter included a description of the survey and the the questionnaire’s content and structure, the survey was purpose of the study. Each survey was identified by a unique modified to include specific nephrological issues. tracking number that was removed from the survey instru- Survey domains included items addressing both fellows’ ment by an honest broker when returned. This ensured the and their attending nephrologists’ attitudes about end-of-life anonymity of respondents while allowing the investigators care, the perceived quantity and quality of teaching in to track which fellows had responded. The study was ap- end-of-life care, and 2 other specific nephrology topics proved by the Institutional Review Board of the University (distal renal tubular acidosis [RTA] and hemodialysis). The of Pittsburgh Medical Center (Pittsburgh, PA). survey addressed specific content areas of palliative care Concurrent with the mailing of printed surveys, an elec- taught during medical training and fellowship, as well as tronic mail was sent to fellows for whom electronic mail exposure to attending physicians trained in palliative care. addresses were available (n 208) asking for their com- Assessment of clinical experiences and training also was pleted surveys and offering a Web link to complete the obtained by asking respondents to note the number of times survey on-line. One week after the initial survey was mailed, they had performed renal biopsies, conducted family meet- a postcard reminder to complete the survey was sent. The ings to discuss end-of-life preferences, and managed termi- link to the Web survey and an individual tracking number nal dialysis patients as primary care providers and as consult- were provided on the reminder postcard. Two weeks after ants. Finally, the survey asked fellows to rate their feelings the initial survey was mailed, a second mailing including a of preparedness to manage 3 types of nephrology patients: token cash incentive ($1.00) was sent to those who had not those on hemodialysis therapy, at the end of life, and with yet responded. A second electronic mail reminder to com- distal RTA, as well as their preparedness to perform specific plete the survey was sent 4 weeks after the initial mailing. palliative care tasks (survey available from authors on re- Telephone contact with 155 nonrespondents was attempted quest). Demographic data were collected and included a by the University of Pittsburgh’s Center for Social and question about the respondent’s inclination toward technical- Urban Research 6 weeks after the initial mailing. Electronic scientific versus socioemotional aspects of medicine, a ques- mail reminders to Program Directors requesting their encour- tion that in previous studies predicted interest in primary agement and support of the project were sent with each care.6 mailing. Statistical analysis was performed using SPSS (SPSS Inc, A total of 181 surveys were received. Incomplete surveys Chicago, IL) and NCSS (NCSS Statistical Software, and those completed by non–second-year fellows were ex- Kaysville, UT) statistical software. Chi-square analysis was cluded, leaving 173 surveys for evaluation (63% response used to compare proportions and Student’s t-test, dependent rate). Most of the 173 surveys were mailed (124 surveys); 39 groups t-tests, or Mann-Whitney U test were used to com- surveys were completed through the Web link, and 10 pare mean or median values, as appropriate. P less than 0.05 surveys were completed by telephone. Thirteen fellows is considered significant. returned cards indicating their refusal to participate in the study. RESULTS The survey was modified from an instrument originally developed to evaluate end-of-life educational experiences Table 1 lists characteristics of the study group. and attitudes of a national sample of medical students, Eighty-one percent were in the second year of a residents, and faculty and was administered in 2001 to more 2-year fellowship, 16% were in the second year than 2,000 respondents (S.D. Block, personal communica- of a 3-year fellowship, and 3% were in their tion, March 2003). The survey was based on focus group analysis, literature review, and recommendations from the second year of a multiyear ( 3 years) fellow- 1997 National Consensus Conference for Medical Educa- ship. All respondents were board eligible in inter- tion in End-of-Life Care. Several survey items were adapted nal medicine. from existing instruments.4,5 The survey instrument was Most respondents (125 of 171 respondents; pretested extensively in its original versions. The Center for 73%) characterized themselves as more inclined Survey Research at the University of Massachusetts-Boston Survey provided assistance in developing the format and toward technological and scientific, rather than editing survey items. Surveys were reviewed by palliative social and emotional, aspects (27%) of medical care physicians, oncologists, generalist physicians, medical care; 66% of technologically inclined fellows students, residents, and fellows. The Center for Survey described themselves as being “a little more Research conducted cognitive testing of the surveys with 15 inclined,” and 34% characterized themselves as students, residents, and faculty to assess comprehension of items and cognitive demands for information retrieval and “a lot more inclined” toward technological and answer formation. Interviewees responded to survey ques- scientific aspects. More women characterized tions and then to a series of structured questions about the themselves as inclined toward social and emo- survey questions to ensure that the questions were under- tional aspects of patient care (43% versus 20% of stood similarly by all respondents. Based on this informa- men; P 0.002). No significant differences were tion, the revised survey was pretested on 47 students, resi- dents, and faculty to field-test the instruments. After additional seen in respondents’ attitudes or preparedness to cognitive testing with nephrology trainees and faculty at the provide palliative care based on this description University of Pittsburgh and expert opinion assessment of of “scientific” versus “social” type. Similarly, no
  3. 3. NEPHROLOGY TRAINING IN END-OF-LIFE CARE 815 Table 1. Respondent Characteristics liative care. Table 2 lists additional information about respondents’ attitudes toward aspects of Men (%) 68 Ethnicity* (%) end-of-life care. There was no association be- White 46 tween fellows’ personal interest in palliative care Asian 35 and how interested they perceived their faculty Hispanic 5 to be in palliative care. Fellows who believed Black or African American 4 learning about the management of dying patients Native American, Alaskan Native, 2 or Native Hawaiian was important were more likely to disagree that Other 12 caring for dying patients is a depressing experi- Year of birth ence (P 0.013), agree that comorbid depres- 1967-1971 120 (69%) sion is treatable in patients with terminal illness Range 1953-1975 (P 0.004), and believe that physicians have a Religion (%) Catholic 24 responsibility to help patients at the end of life None 17 prepare for death (P 0.006). There was no Hindu 16 correlation between the importance attached to Protestant 14 learning to care for the dying and self-perceived Muslim 10 preparedness for managing patients at the end of Jewish 10 Other 9 life. Importance of religion to respondent (%) Very 36 Palliative Care Teaching During Fellowship Somewhat 33 Figure 1 shows teaching received during fel- A little 17 lowship in 3 specific areas of clinical nephrol- Not at all 15 Medical school (%) ogy: hemodialysis, distal RTA, and end of life. United States 83 The amount of teaching in end-of-life care was Non–United States 17 rated lowest (P 0.001). Fellows also rated the Year graduated (%) quality of teaching they received in end-of-life 1995-1997 65 care as significantly lower than the overall teach- 1997 37 Range 1944-1997 ing quality during fellowship: on a scale of 1 to Clinical fellowship completed (mo) 5, with 5 being excellent, the mean of the overall Median 17 teaching quality was 4.0 0.9 versus the mean 95% 16-19 of the end-of-life care teaching quality of 2.3 Range 1-24 1.09 (P 0.0001). Practice plans (%) Private practice 48 As shown in Fig 2, specific palliative care Mix private/academic 17 content areas were taught infrequently during Clinical academic 15 fellowship. Seventy percent of fellows had no Basic research 8 explicit teaching in pain management during Clinical research 7 fellowship training, and only half the fellows Other 5 were taught how to respond to a patient’s request NOTE. N 171. to stop dialysis therapy. Less than 30% of fel- *More than 1 ethnicity could be noted by respondents. lows reported receiving training related to cul- tural or spiritual issues in end-of-life care. other demographic features were associated with Only 5 fellows reported having an opportunity this self-description. to rotate on a service focusing on end-of-life or palliative care during their fellowship; 1 fellow Attitudes Toward Caring for Dying Patients participated in the rotation. However, 45% of Nearly all respondents (99%) agreed that phy- fellows reported contact during nephrology fel- sicians have a responsibility to help patients at lowship training with clinicians specializing in the end of life. Half the respondents believed it palliative care. Fellows who had contact with was very important to learn how to provide care clinicians specializing in palliative care were to dying patients (Table 2). A similar proportion more likely to report being taught explicitly how believed their attending nephrologists valued pal- to determine when to refer a patient to hospice
  4. 4. 816 HOLLEY ET AL Table 2. Attitudes Toward Caring for Dying Patients How important is it to learn to provide care to dying patients? Not at All/Not Very Important (%) Moderately/Very Important (%) To you (respondents) 47 54 To your attending nephrologist 36 63 How much do you agree with the following statements? Completely/Generally Disagree (%) Generally/Completely Agree (%) Caring for dying patients is depressing 53 47 It is possible to tell patients the truth 23 78 about a terminal prognosis and still maintain hope Depression is treatable among patients 15 84 with terminal illness Physicians have a responsibility to help 1 99 patients at the end of life prepare for death (43% versus 27%; P 0.05). However, contact with dialysis patients during fellowship. Fellows with palliative care specialists during fellowship were more likely to have acted as consultants training did not increase the likelihood that fel- rather than primary physicians treating long- lows were taught specifically how to respond to a term dialysis patients in the last few weeks of patient’s request to stop dialysis therapy (55% their lives: 101 fellows reported caring for 10 or versus 42%; P not significant). more such patients. Fellows had provided care for an average of 15 dying patients. Fellows had Experience in Caring for Dying Patients few opportunities to hold a family meeting to Most fellows (136 of 173 fellows; 79%) re- discuss goals of care; only 35% of fellows re- ported longitudinal relationships ( 6 months) ported conducting more than 6 family meetings. Fig 1. Teaching versus preparedness on 3 nephrology topics.
  5. 5. NEPHROLOGY TRAINING IN END-OF-LIFE CARE 817 Fig 2. Content areas explicitly taught during fellowship. Thirty-two percent of fellows had conducted 2 or feedback from the attending nephrologist on the fewer family meetings to discuss goals of care meeting (Fig 3). Only 15% of fellows reported for a terminally ill patient. Meetings conducted receiving attending nephrologist feedback on their by the fellows rarely were educational opportuni- performance more than 7 times. Conversely, as ties; 26% of fellows reported conducting a fam- shown in Fig 3, fellows performed a mean of 5 ily meeting without attending nephrologist obser- renal biopsies, and 92% reported attending neph- vation, and even when attending nephrologists rologist feedback on biopsy technique 7 or more were present, 30% of fellows never received times. Fig 3. Comparison of precepted skill development during fellowship.
  6. 6. 818 HOLLEY ET AL Preparedness to Provide Nephrological and little training in recognizing and managing the Palliative Care physical, psychological, and existential aspects As shown in Fig 1, fellows believed they were of caring for dying dialysis patients. As a result, best prepared to manage a hemodialysis patient fellows believe they were less prepared to pro- and least prepared to manage a patient at the end vide end-of-life care than to manage both com- of life (median scores, 9 versus 6, respectively; mon (hemodialysis) and uncommon (distal RTA) P 0.00001). Fellows who were poorly pre- nephrological clinical problems (Fig 1). Fellows pared to manage a patient at the end of life who had contact with palliative care specialists reported less and lower quality palliative care during training reported more education on end- teaching during fellowship: 72% of fellows who of-life issues and believed they were more com- believed they were unprepared to care for a petent to provide such care. Despite this, all but 2 patient after withdrawal from dialysis therapy fellows thought physicians have a responsibility reported 0 to 3 on a 10-point scale (0, no teach- to help patients at the end of life and half be- ing; 10, a lot of teaching) on the amount of lieved it was important or very important to learn teaching on end-of-life care during fellowship. how to provide care to dying patients (Table 2). Fellows who had contact with a physician special- This disparity in perceived responsibility and izing in palliative care were more likely to be- desire for education is interesting and not ex- lieve they were prepared to manage a patient at plained by survey results. It may be that despite the end of life (6.6 2 versus 5.8 2; P believing that physicians have a responsibility to 0.017, where 0 “completely unprepared” and care for patients at the end of life, half the 10 “feel as prepared as I can be”) and better respondents are not interested in this aspect of prepared to address cultural issues related to nephrology practice. end-of-life care (P 0.05). Interestingly, they On the positive side, only 12% of surveyed did not believe they were more knowledgeable fellows reported never conducting a family meet- or prepared in other areas of palliative care ing regarding goals of care for a terminally ill (managing pain, discussing end-of-life issues, patient. Unfortunately, even when fellows have addressing spiritual issues, managing one’s own such experiences in end-of-life care, these oppor- feelings about a patient’s death). tunities for education often are missed. Thus, unlike renal biopsies, in which fellows are nearly Fellows’ Knowledge of Dialysis Patients’ always observed (and taught) by an attending Mortality nephrologist, attending nephrologists do little to ensure competence in conducting family meet- Fellows were asked a single multiple-choice ings. This deficiency in training raises concern knowledge question on the survey: What is the because family meetings about goals of care are annual gross mortality of patients on dialysis? common in nephrology practice. Reimbursement The correct answer is 20% to 29%. Two thirds of issues may partially account for these differ- respondents chose the correct answer; 12% of ences, but questions of attending comfort and fellows underestimated and 21% overestimated expertise in providing and evaluating this aspect the annual mortality of dialysis patients. of fellow-delivered patient care also may contrib- ute to observed differences. Most clinicians do DISCUSSION not believe they are competent to provide pallia- This is the first nationally representative study tive care,7 and it is likely that inadequacies in this to document the status of education about end-of- aspect of clinical practice contribute to a lack of life issues among nephrologists in training. Fel- attending involvement and teaching. lows surveyed were in their second year of Although most fellows believed they were training, and most were near the completion of prepared to manage a patient on long-term hemo- training and anticipating a career in clinical ne- dialysis therapy (Fig 1), a third of the surveyed phrology (Table 1). Our results show that nephrol- fellows did not recognize the correct gross mor- ogy fellows believe they receive good training tality of long-term dialysis patients. This lack of during fellowship generally, but not in end-of- recognition of the limited life expectancy of life care (Figs 1 and 2). Specifically, they receive many dialysis patients may contribute to inad-
  7. 7. NEPHROLOGY TRAINING IN END-OF-LIFE CARE 819 equate palliative care, especially in areas of ad- fellowship training, but palliative care content vance care planning and symptom manage- areas are not specified.13 National nephrology ment,8,9 and is additional evidence of the lack of organizations recognize the importance of pallia- emphasis in end-of-life issues in training pro- tive care in nephrology and are supporting educa- grams. tional publications and programs on this topic,3 A limitation of our study is the questionnaire but, to date, have not developed formal recom- response rate. Although the 63% survey response mendations for including palliative care in the rate is excellent in terms of survey studies, re- curricula of training programs. Our results docu- sults may not be generalized to nephrology fel- ment the need for such curricula revision. lows and training programs as a whole. We Because at least 35% of a nephrologist’s time cannot exclude the possibility of respondent bias is spent in the management of long-term dialysis by either demographics or training program char- patients,1 and more than 20% of these patients acteristics, although there were no significant die each year,14 palliative care should be incorpo- associations with regional location or fellowship rated into nephrology training programs to im- program characteristics (number of fellows, uni- prove knowledge and preparedness in this area versity- or community-hospital based). of clinical medicine. Surveyed fellows believed Another limitation of the study is that pallia- palliative care was important to them and their tive care competencies of fellows were not di- attending nephrologists (Table 2); however, our rectly assessed. We obtained information only on results show the lack of palliative care teaching fellows’ self-assessment of training and prepared- and training in current nephrology fellowship ness in palliative care. Because novice physi- programs. Many models for incorporating pallia- cians regularly overestimate their competen- tive care into training programs exist,15-17 and cies,10 our survey results likely are overestimates some nephrology groups are increasing our under- of fellows’ competencies. The tendency to over- standing of nephrology-specific palliative care.9 estimate one’s clinical competency also may The nephrology community owes it to patients contribute to a lack of reported difference in and their families, trainees, and dialysis staff to knowledge of specific palliative care content include this material in nephrology fellowship areas among fellows with and without exposure training program curricula. Survey results sug- to a palliative care specialist during training. gest a need for improved training and show that Furthermore, we did not verify the presence or most fellows have interest and positive attitudes absence of palliative care training in the indi- about this subject. vidual fellowship program curricula. However, it is likely that few nephrology training programs ACKNOWLEDGMENT include specific palliative care content areas in The authors thank Stu Linas, MD, for his support of this their curricula.11 project and Matthew Pesacreta, MD, for assistance in data collection. Despite the Institute of Medicine’s 1997 rec- ommendation to initiate training in palliative REFERENCES care during undergraduate and graduate medical 1. Mitch W, McClellan WM: Patterns of patient care training,12 few medical subspecialties include reported by nephrologists: Implications for nephrology train- specific topics in end-of-life care in their cur- ing. Am J Kidney Dis 32:551-556, 1998 ricula.11 Geriatrics and hematology/oncology 2. End-Stage Renal Disease Work Group: Final Report were the only subspecialties addressing end-of- Summary and Recommendations to the Field. Promoting life care beyond general requirements in ethics Excellence in End-of-Life Care, Robert Wood Johnson Foun- dation. Available at: Ac- and psychosocial care.11 Geriatrics fellowship cessed: April 1, 2003 specifies end-of-life training in the domains of 3. Renal Physicians Association and American Society of pain and nonpain assessment and management, Nephrology: Shared Decision-Making in the Appropriate physician-patient communication, and death and Initiation of and Withdrawal From Dialysis. Clinical Prac- dying, in addition to the general categories of tice Guideline 2, Washington DC, Renal Physicians Associa- tion and American Society of Nephrology, 2000 ethics and psychosocial care.11 The Accreditation 4. Solomon MZ, O’Connell L, Jennings G, et al: Deci- Council for Graduate Medical Education stipu- sions near the end of life: Professional views on life- lates that “ethics” is to be included in nephrology sustaining treatments. Am J Public Health 83:14-23, 1993
  8. 8. 820 HOLLEY ET AL 5. Rappaport W, Witzke D: Education about death and end-of-life training in selected residency and fellowship dying during the clinical years of medical school. Surgery programs: A status report. Acad Med 77:299-304, 2002 113:163-165, 1993 12. Institute of Medicine: Approaching Death: Improving 6. Block SD, Clark-Chiarelli N, Peters AS, Singer JD: Care at the End of Life. Washington, DC, Institute of Academia’s chilly climate for primary care. JAMA 276:677- Medicine, 1997 682, 1996 13. Accreditation Council for Graduate Medical Educa- 7. Bradley EH, Cramer LD, Bogardus ST, Kasl SV, tion: Program Requirements. Available at: http://www.acgme. Johnson-Hurzeler R, Horwitz SM: Physicians’ ratings of org/. Accessed: April 1, 2003 their knowledge, attitudes, and end-of-life care practices. 14. US Renal Data System: Excerpts from the USRDS Acad Med 77:305-311, 2002 2001 Annual Data Report. Am J Kidney Dis 38:S1-S248, 8. Hines SC, Glover JJ, Holley JL, Babrow AS, Badzek 2001 (suppl 3) LA, Moss AH: Dialysis patients’ preferences for family- 15. Danis M, Federman D, Fins JJ, et al: Incorporating based advance care planning. Ann Intern Med 130:825-828, palliative care into critical care education: Principles, chal- 1999 9. Cohen LM, Reiter G, Poppel M, Germain M: Renal lenges, and opportunities. Crit Care Med 27:2005-2013, palliative care, in Addington-Hall J, Higginson I (eds): 1999 Oxford Textbook of Palliative Care for Non-Cancer Patients. 16. Block SD, Bernier G, Crawley LM, for the National London, UK, Oxford University Press, 2001, pp 103-113 Consensus Conference on Medical Education for Care Near 10. Hodges B, Regeher G, Martin D: Difficulties in the End of Life: Incorporating palliative care into primary recognizing one’s own incompetence: Novice physicians care education. J Gen Intern Med 13:768-773, 1998 who are unskilled and unaware of it. Acad Med 76:S87-S89, 17. Fins JJ, Nilson EG: An approach to educating resi- 2001 (suppl) dents about palliative care and clinical ethics. Acad Med 11. Weissman DE, Block SD: ACGME requirements for 75:662-665, 2000